#RAREvolution

STAND UP FOR SCIENTIFIC RESEARCH ON RARE DISEASES

The BLACKSWAN Foundation believes that a stronger engagement at international level is fundamental to attract more resources, create new incentives for research and develop therapies for millions of patients. The #RAREvolution program combines the work and experience developed by the BLACKSWAN Foundation in the last years (the RE(ACT) Initiative, congress and community) with new interventions aimed at integrating its action.

Increasing awareness for rare diseases research and therefore improving the understanding of rare diseases among the public, politicians, health professionals, researchers and academics is one of the main objective of the #RAREvolution. BLACKSWAN Foundation is carrying out, through its digital channels an online communication action, “#RAREvolution: Stand up for scientific research” on the importance of advancing rare disease research.

In collaboration with other rare diseases organizations, BLACKSWAN Foundation also aims at encouraging further progress in the recognition of rare conditions as a public health and research priority and advocate for new and more effective international and national policies. An international petition launched on change.org is part of this action. The petition provides nine points as guidance for the establishment of policies on rare diseases research:

  • Increase allocation of resources
  • Promote a multi-disciplinary and coordinated approach
  • Adopt specific incentives policies
  • Leverage existing knowledge and optimize the use of existing drugs: support innovative drug delivery systems and drug repurposing efforts.
  • Widen health economics criteria in considering the cost-effectiveness of RDs research
  • Adopt appropriate and internationally recognized rare disease classification systems
  • Invest in innovative diagnostic methods of rare diseases to enable early intervention
  • Set criteria for ante-natal and newborn screening and ethical controls
  • Recognize the expanding role of patient groups in contributing to develop and foster knowledge and awareness on rare diseases, and include patients at all levels in the development of policies, research agenda and protocols for specific rare diseases
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